Nourishing the Soul

As this is my first blog post in ages, hello! Combination of reasons which I’ll maybe touch on another time, but long story short the urge to write just came & it can never be ignored so here we are again.

This was inspired in particular by a twitter post from one of my favourite historians, Dr Janina Ramirez, who is a joy to watch on TV & follow online; she comes across to me as bright, passionate, quirky, kind, & beautifully her own person, & I admire her very much. Her post is below, I’ve also typed out the text in full for anyone using screen readers.

I’ve not been on twitter much. It’s a combination of things. Anxiety over the state of things. A Covid response & going more into myself. A loss of interest in promoting myself & thinking my own interests pale against the concerns of so many. But I still send you all love ❀️

Dr Janina Ramirez 28 August 2020 twitter

Basically what happened is I started writing a simple reply & realised I had thoughts. Lots of thoughts – In essence what I wanted to say to Janina was simply please do whatever you need to keep yourself as well as possible. It’s what we all should do. And if that means breaks from news or social media then of course that’s OK 😊 These are trying times for us all, when you are able to share lovely art it brings me & others joy, but I totally understand that has to be when it feels right to you & you have the mental energy & space to do so.

But I feel quite strongly that the second point Janina makes is a wider reaching conversation; namely “a loss of interest in promoting myself & thinking my own interests pale against the concerns of so many”. I’ve seen other people in the public eye (I hate the word celebrities), people who I believe are decent & kind people make similar comments over the past weeks & months. It’s totally understandable, 2020 has been a shitstorm of epic proportions & by direct comparison is sharing a piece of art or poetry or a song or a dance routine or a recipe or a fabulous cocktail important when held up against against Covid-19, BLM, or the state of Politics?? Definitely not, & at the same time Abso-fucking-lutely.

I believe when we stop feeding our souls we start to lose our humanity. When days are dark & times are troubled & we’re uncertain about tomorrow is exactly when we must make time to nourish the best part of ourselves, the part that can lose our eyes in a painting for hours, be it Picasso or Van Gogh. The part that allows music to transport us to far off times & places; poetry to allow us to feel empathy & connect; comedy to remind us to laugh & that life itself is often wonderfully silly; ballet where dancers take flight to tell stories with no words; history programmes that continue to investigate our past & allow us to learn & improve & have hope for our future.

Often it’s what might seem trivial in comparison to the “big stuff” that brings us our daily moments of joy & the strength to put one foot in front of the other & smile, if we can but pause to take the time to notice.

So to end, I would ask anyone, not just people with a large audience, when you feel able to please share your small stuff – the cakes you’ve baked, the photos you’ve snapped, the art you love, the stories you write & the music you rock to, & if it happens to be what you do for work please don’t apologise. If you bring even 10% of your viewers, readers & listeners a little joy & a smile to their day then I think that’s fantastic!

Namaste πŸ™ πŸ’™

Defined by?

A recent thread by @HannahPearl_1 on twitter questioned the suggestion from someone that “it’s important not to be defined by” our illness. Hannah went on to say she understood what the person meant but didn’t feel able to agree.

This got me thinking. ‘Defined by” is a term that crops up a lot in #ChronicLife circles & forums online. People tend to be either against it as somehow limiting, or in favour of it because our illness affects every aspect of our lives.

But what does ‘defined by’ actually mean? I’ve had a trawl through Merriam Webster online looking at meanings & synonyms to try & pin down a definition, and it’s a little slippery. But I love language so let’s give this a go!

Defined has a number of uses which vary the meaning:

  • to draw or make apparent the outline of
  • to mark the limits of
  • to point out the chief quality or qualities of an individual or group

It’s the second & third definitions I’m interested in here, because I think this may be where the divergent opinions around the phrase derive from. Let’s have a look at both…

To mark the limits of

If one applies this to living with a chronic condition I would take ‘defined by’ to mean that we acknowledge our illness affects us in ways that inhibit the way we live our lives. For me this meaning absolutely applies to my life. Inspiration porn often tells us nonsense like “the only disability is a bad attitude”, and this simply isn’t true.

Current popular ideology leans towards telling everyone they can be anything, do anything and there are no limits, which is a lovely sentiment in fairy tales but totally untrue in real life. We all operate within limits, whether they’re the law of gravity or simple genetics – someone like me with red hair, pale skin & freckles is never going to achieve a suntan!

That doesn’t mean giving up on ambition & dreams, or never setting goals, of course not. We all need things to strive for, to challenge ourselves, to work towards. What it does mean is that we can live our best lives by focusing on the possible, the achievable, and taking steps at our own pace to get there.

To point out the chief quality or qualities of an individual or group

Applying this to living with a chronic illness implies that we are characterised by our condition, that it becomes an intrinsic part of our being. Again, this undoubtedly applies to my life. I am no longer able to separate out my illness & disability from who I essentially am, and I don’t see that as a bad thing.

This doesn’t mean it is all that I am or can be, just that #chroniclife is entwined with my sense of self, my lifestyle & my place in the world and I’m very ok with that. I think this is completely natural human behaviour – if I flip back in time to when I was working my whole identity was entwined with my career in the training sector, which is why it was initially so very hard to accept having to effectively retire. I wasn’t sure who I was without being defined by what I did.

It doesn’t help that as a society we value people by what they do, not who they are, and we love putting people in boxes & applying labels. Would I let anyone else characterise me or define my limits? Not a chance. But as a chronically ill person with disabilities I’ve definitely earned the right to set my own.

And I choose to identify with my illness, my disability, and do so proudly. It’s taken me a lot of work & some fab therapy to get to this point in my life, and I’m happy to own it.

But you know what? If you don’t feel this way that’s fine too, surely one of the most important things we do is choose how to define ourselves πŸ’™

A Question of Kindness…

An author I admire, Vironika Tugaleva, asked a question of her followers a while ago – the seemingly simple ‘What is the difference between being nice & being kind?’ I fired off a quick tweet in reply & promptly forgot about it – the transience of twitter!

My response, which was very off the cuff, was this – ‘I think being nice comes from conscious thought, whereas being kind is unconscious & authentic.’

You may understand the moment of sheer (if irrational) panic when she tweeted me back today, saying ‘That’s an interesting distinction. Do you think we need both?’

For a few seconds my brain just fizzled! “Why did I say that, I’ve never really thought about it, what did I actually mean, arghhh!” It was roughly the adult equivalent of sticking your hand up in class at school then realising you’d forgotten the question πŸ™ƒ

(This only lasted for an instant & I’m actually amused by my thinking. In some dim recess of my mind I’m still, like most of us, waiting for someone to stand up & shout “fraud!” whenever I put my thinking out for scrutiny. Do we ever lose that completely?).

Once I’d taken a breath & re-read my initial response, of course it made sense to me. I’d like to think at the grand but young age of 48 I’m consciously responsible for at least some of my thought process! So my response was thus:

“I’d say yes – for me I think being nice would be saying yes to giving someone a lift even while internally saying “damn that’s going out of my way”, while when being kind I would offer without any thought of inconvenience. Does that make sense?”

(Just realising that even then I’d ended on a plea for understanding, note to self, post with more confidence!)

For me I think both are equally important, especially in today’s hurly burly rush-rush world. I think when we’re on auto-pilot through the day it’s easy to forget to be kind. When you’re perhaps juggling the school run, breakfasts, & getting to work, & you’re already running behind the neighbour asking if you could drop her kids off too is an immediate irritant. It’s too easy to feel like saying ‘fgs can’t you see I’m busy’, & I think a societal expectation of nice or pleasant behavior kicks in & makes you say ‘yes of course, more the merrier’ instead of throwing your smoothie* at her children.

*please don’t try this at home!

On the other hand, when we’re able to slow down & breathe, when we’re living more mindfully, our internal priorities tend to be more aligned with our conscious behavior. And that’s when our innate kindness is to the fore, when we selflessly offer to help others without first weighing up costs to our time, our schedule or our own expectations of the day.

Because being kind is heartfelt & authentic behaviour, it makes us feel good too, because we’re sending a little seed of love & kindness out into the world where it can perhaps take root and grow. And that’s better for everyone.

Wishing you all a joyful week

Namaste πŸ™πŸ’™

Vironika’s latest book, The Art of Talking to Yourself, is a beautiful read, it’s currently sitting beside my bed & although I’ve not yet finished it I’d highly recommend you treat yourself to a copy – it’s food for the soul.

Behind The Illness is Me…

Thanks to Emma, who is part of my twitter tribe and a fellow person with ME for tagging me in #behindtheillness – it’s a lovely reminder that all of us living #chroniclife are also very human! You can find her great blog at NotJustTired

So you can find below some interesting & totally not useful facts about me 😊

Four places I’ve lived:

1. Stroud, Gloucestershire (my actual & spiritual home).

2. Eastbourne, West Sussex

3. Clifford’s Mesne, Gloucestershire
4. Constantine Bay, Cornwall

Four places I’ve worked:

1. The Swan Inn – chef & barmaid extroidinnaire!
2. Stroud College – Lecturer in Floristry
3. JHP Training – teaching then management across the South West
4. Athena, Bournemouth – book retailer

Four favourite hobbies:

1. Reading
2. Knitting (very much a learner)
3. Writing – my blog, poetry & occasionally stories
4. Meditation

Four things I like to watch:

1. Criminal Minds

2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers

Four things I like to read:

1. Fantasy – swords & sorcery – Feist, Eddings, Hobbe, Douglass
2. Spiritual – Thich Naht Hanh, Ruby Wax, Russell Brand, John Kabat-Zinn
3. Thrillers – Koontz especially
4. Poetry – most recent discovery is the C14th Persian poet Hafiz – sheer beauty through words

Four places I have been:

1. Guardalavaca, Cuba
2. Marrakesh, Morocco
3. Vienna, Austria
4. Ghent, Belgium

Four things I love to eat:

1. Chocolate
2. Steak & roasted vegetables
3. Indian food
4. Lamb Tagine

Four favourite things to drink:

1. Coffee especially cappuccino!
2. Green Tea
3. Havana Club aged rum (very occasional treat)
4. Mango & Passionfruit Juice with soda and ice

Four places I want to visit:

1. Budapest
2. Iraq, Iran & Syria (ancient Persia, pictured below)
3. St Petersburg
4. Canadian Rockies

Four bloggers I’d like to tag:

1. The very lovely Wren at RheumablogWren
2. The wonderful disability advocate Shona at ShonaLouise
3. The fabulous & focused Sally at SallyJustME
4. The boldy tweeting and often amusing Elise at TheFragileBones

There are lots of other bloggers I’d love to tag, I’m just hoping I’m not duplicating the tag with my choices!

I initially thought this would be a quick five minutes, then started thinking, reminiscing….. It’s been good fun.

Namaste πŸ’™

Simplifying Part One – Living SpaceΒ 

I’ve not done this before, but I’ve just come up with an idea for a few linked posts around the theme of Simplifying. It’s a term we hear a lot, especially in chronic life, of course simplifying makes things easier! Sounds obvious but is it? 

So what exactly do we mean by simplify – common synonyms include to make easy, make plainer, remove the complexity from, or make more accessible. Whilst the latter here would appear at first glance to apply to ‘us’, because accessibility is often at the forefront of our minds, the rest are certainly appealing to me too, who doesn’t want things easier or less complex?! 

So we agree simplifying stuff is good. Where do we start? The first one I’m writing about here is in the home, our living space. Whether it’s a palace, a bedsit or my own little bungalow there are definitely things we can do to make our daily lives easier.

And immediately one of the biggest challenges for a lot of people raises it’s head – where to start! When you have a houseful of things that you may have had for one year, five years or even thirty years, it’s very difficult to at least partially detach emotion from belongings so you can make sensible decluttering decisions with a clear head. But it’s really important that you do. Stuff is just that, stuff. Good memories live on in our minds and our hearts. 

Often this is where you can enlist help from a practical friend or family member, they may help you keep a clearer head. Keeping a pearl ring because it was grandma’s is a lovely momento. Keeping an odd sock she knitted in 1963, or a chair she sat in once, not so much. 

I’ll admit I find this easy, as I’ve never been very attached to things, I believe it was because my lovely mum was a…. collector 😊 so I’ve just gone the opposite way. I always remember the mild but tangible panic in our house the day before family visited, piles of stuff (from magazines to ironing) that had mysteriously grown were hidden upstairs or squeezed into cupboards before actual cleaning could commence. Don’t get me wrong, it was never dirty, it was just always cosy and cluttered.

I’ve spent a number of my adult years married, so it’s only really in the last five years I’ve truly discovered my own decorating style, and whilst not stark it is a little minimal. I’ve had friends comment how tidy I am. I’m truly not, I just don’t like clutter so I put things away. They have a place, and that generally means I can find them!

But yes, even I had a challenge downsizing from a three bed bungalow to a small one bed bungalow eighteen months ago.  And I’ve cleared out again since, because I still brought too much with me. With every room I’ve had a rule, if it’s not truly beautiful (to me) or useful it goes! Using a combination of local selling sites have netted me money for a lot of bits and pieces, and charity shops have benefitted too. I just sold a mirror today for Β£20 😊

So how do you simplify YOUR living space? My top tips

  • Pick a room. Never attempt more than one room at a time, you’ll get disheartened and give up. Once you’ve chosen a room split it mentally into sections. So if you’re doing the bedroom for example, break that down into the chest of drawers, the bedside cabinets,  the dressing table and the wardrobes. This way when you start running low on spoons you’re never in the middle of a big clear out, so it’s manageable to finish one task at a time. 
  • Wherever you’re cleaning grab three bags, crates, boxes, whatever is suitable. Then label these (mentally is fine!) Sell, Donate, Trash. Anything you’re keeping simply stays in the drawers/wardrobe etc – easier to sort it when you’ve got more space. One rule here – items can swap boxes but they can’t come back out, be strict with yourself! 
  • Stay organised. If you get help to stash boxes in, say the garage, until you’re finished make sure the donate/sell piles are separate, and the trash goes directly in the trash bin. 
  • Be as unemotional as possible, and as ruthless as you can stand. If you’re finding it hard, think of the money you could raise, the good you’ll be donating, and how lovely it will be to have your nicer things accessible, clean and tidy!

If you’re still feeling up to it, once you’ve cleared a room and before you start the next give a once over with a critical eye. Does the layout work easily for you? Can you move or lose a cabinet or table now you’ve cleared it to give you more space? Will that chair be nicer by the window? Trust me, this is addictive, I promise once you’ve done one room you’ll be itching to start the next!

Just remember, small manageable chunks, spread out your spoons. Keep reminding yourself you are simplifying, making things easier for YOU! 

So how am I doing? Good so far, slowly but surely, I even raised enough from selling last year to buy a new (second hand) sofa! I have just three spaces left to tackle. First is my bedroom, it’s almost finished, just the wardrobes to do now, which I keep putting off. I never said I was perfect! Next is my cloakroom cupboard. I know I have coats, shoes, boots etc I’ve not worn in over a year and they need to go. Last will be my ‘office’ cupboard in the hall which will be the easiest by far. Some of this simplication will definitely bring me a little money. Now I just need to dig up the energy!